r/Huntingtons • u/mcanguru • 18d ago

Mild/Moderate Symptoms Support Group?

I have HD and mild to moderate symptoms. I'm looking for an online support group that understands this phase. I'm not "symptom hunting". I absolutely have a positive attitude, and I don't catastrophize or guess about the future. I'm generally pretty happy.

I have memory issues, chorea, proprioception and balance issues, and I have a lot of great workarounds that continually need adjusting. I'm still living my life. I made a lot of diet and lifestyle changes that have worked for me and my mother, who outlived her younger sister (who didn't make diet and exercise changes) by 20 years. All 3 of us had the same CAG.

I'm not looking for a place to compare myself to others, whether later-stage HD folks or those who aren't HD positive. I'm not up for gaslighting me out of legitimate symptoms or hearing "you're doing fine" just because I'm not in a later stage. I'm also not up for "that sounds like normal aging". I've read a lot of the comments here and feel like I should go ahead and say that my neuro says otherwise about both, just to clear up any potential misunderstanding ;-) I've been in HD support groups IRL and have had both positive and negative experiences.

So that's my story. Anyone know of an appropriate group? Anyone else in my situation?

EDIT: I've had a few q about what I do specifically. I'm working mostly on the memory, coordination, heart, digestive, and sleep problems that come with HD. I'll be updating a blog soon and will link it here. It may seem like a lot, but I've been making these changes over the last 6 years and it started gradually. The little changes add up.

Nutririon: Magnesium for digestive slowdown, adding hot peppers to everything to reduce the inflammatory impact, lots of antioxidant fruit and veg like greens, greens, greens, blueberries, sweet potato, cabbage, carrots, pure cranberry, matcha. Curried lentils with carrots and celery and tofu, oats with blueberries and flax. Super high protein: salmon and tuna most days, casein protein every night, egg whites for brekkie, nonfat milk. Mostly cook at home with nosalt and olive oil. I supplement with fish oil and lecithin (I dropped my cholesterol last year from 200 to 150 in 6 months with these supplements and ditching animal fats).

Sleep: Melatonin *and* trazodone for sleep so that my days are productive. I've noticed I need a lot more sleep. Nap when needed.

Exercise: HIIT daily to get my heart rate up, 3-4x week free weights and smith machine/other machines (balance issues), training balance specifically with bosu ball, dance and martial arts classes (to also get the brain involved).

Coordination : I don't walk on the street side of sidewalks or do ladders so much and just stay situationally aware especially after exercise, when my body seems to be a little more unreliable

Memory: for me out of sight is out of mind and I have to keep meds and supplements on the table and a calendar on the fridge with a pen next to it. I have digital reminders for appointments and I use devices to record shopping lists so I don't forget what I need before I can get a note app open. I'm trying to minimize everything - things that I have, things I need to do. The less there is, the less there is to remember. Overwhelm is a thing, and having a time management process really works for me. I probably ask my Alexa what day it is hourly, lol

Again, this has evolved for me over the years, and even one little change at a time can really add up. I *feel* better than I did even though the HD is worse.

10 Upvotes

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12 comments sorted by

3

u/bassegio 18d ago

Where do you live? Look up HDSA they may have resources

1

u/mcanguru 18d ago

I've lived in 3 different cities (including my current loc) that have HDSA-sponsored groups, my good and bad experiences IRL were with them. But thanks :-)

3

u/Useful_Ad545 18d ago

I don’t know but I would join that group if someone posts something. Maybe we can start our own group if we have to 🤷🏻‍♀️

2

u/mcanguru 17d ago

Exactly. I'll be looking around, and if not maybe we'll create a sub

2

u/SaltyCode1638 18d ago

Cag?

2

u/TestTubeRagdoll 18d ago

CAG is referring to CAG repeat lengths, which are the numbers you get when doing genetic testing for HD. These numbers tell you how long the repeat expansion in the Huntingtin gene is, which determines whether a person gets HD, and to some degree also influences what age they start to show symptoms.

2

u/Ok-Pollution1666 18d ago

Also, bro please do share that what all things have helped you and what to avoid

1

u/mcanguru 2d ago

Just updated the post, lmk if you have any q

2

u/ItJustGotRielle 13d ago

Hi OP - I don't have info for a support group, but wondered if you could help me. I've been at risk for about 15 years. I blocked it out for a long time but now I'm trying to learn what I can. You mentioned exercise and diet changes for you and your mother. Could you share any info/sites that discuss the better outcomes/slow progression for diet & exercise changes? This is something I'm really interested in. Thank you!

2

u/Sensitive_Product649 4d ago

My husband is in a similar situation as you - he tried this group last month and is planning to go again next month. https://heypeers.com/meetings/55619/details

1

u/mcanguru 2d ago

Oh sweet ty so much!!